Tag Archives: look me in the eye

House of Cards – Autism Style

Stacking cards is a new opportunity for William to pass the time

Stacking cards is a new opportunity for William to pass the time

“Seth Says…”

Don’t worry…I’m not going to blog about Francis and Claire Underwood and tie that into the autism world…although that would be quite a blog huh?  Maybe we should get the show “House of Cards” to write a Bill that actually has some teeth to autism funding–wouldn’t that be an interesting plot!

But I digress

So this past weekend was the Fourth of July.  In the past, weekends have been very difficult for our family because it’s hot in Texas and we tend to run out of things to do–and when William runs out of things to do his behavior goes down the drain in a hurry.  I can’t speak for Melanie but I know I was a bit nervous about this extended weekend and how we were going to pass the time–and how we were going to keep William as occupied and happy as possible.

It just so happened that on July 3rd I had a little poker night at the casa…I stink at Texas Hold ‘Em but love playing…and so I had a few new stacks of playing cards lying around the house on the 4th of July.

After breakfast Melanie started playing with them and trying to build a house of cards with the playing cards while Margaret and I played a card game that she was making up on the fly (she always seems to be the winner of those games…hmmm)

William was stemming with  his brush and spoons and I could tell he was getting bored.

Then all of a sudden he took an interest in what Melanie was doing.  He wanted no part of the game Margaret and I were playing, but he became fascinated with Melanie stacking the cards and building a structure.

She offered William a stack of cards and PRESTO…he was hooked.  I don’t think he’s going to become a professional card stacker…but it was really cool to see him sitting there trying to stack the cards.  He’d get pretty frustrated when they would fall but we encouraged him to be gentle to the cards and keep trying.

He probably played with those cards for 30 minutes.  That might not sound like a lot but as a parent you know that’s a huge victory–the kid really doesn’t like to play with much.  He isn’t really into Legos or TV or games…he lines up cars, jumps on his mini-trampoline and taps on his favorite brush and spoons.

I don’t know if card stacking is going to be a new fixation for William but it was really cool to see him working at getting the cards just right and the excitement on his face when he would get one or two levels stacked.

So if you’re looking for something for your child to do…go spend $1.99 and buy a pack of cards and have fun!

To read more blogs from Melanie, Seth and TheFowler4Group, check out their Website (www.lookatmyeyes.com) and while you’re there, buy a copy of their book, “Look At My Eyes”.  Or find them on YouTube.  To contact TheFowler4 Group email: info@thefowler4group.com

 

Making Sense of Scratching, Clawing and Biting

It’s December 27th…probably the worst possible day to write a blog and expect that someone will read it…much less respond to it.  But who cares…I have time to write and I just had a good conversation with a buddy of mine who is also a daddy with a son with autism and so it motivated me to write a blog.  So…to the tens of people out there today on December 27th who are blogging or searching…this is for you!

My friend and I talked about how at times our sons (his 5 and mine 7-years-old) can have immediate fits where they scratch and bite and claw and do all that fun stuff that comes with autism.

I don’t know why his does it, but I think my wife and I have somewhat made sense of William’s fits…and it all is about communication.  UGH!

Lately we’ve noticed that he’ll claw/bite/scratch/pinch whatever when he just can’t communicate his needs and wants.  Yeah, yeah, yeah this sounds pretty simple but as he gets older, it’s more and more complex.

William recently reverted back to scratching/clawing/biting not just when he doesn’t get his way, but when he can’t express what he wants and he is embarrassed.

Yep…he’s embarrassed that he can’t explain what he wants.

Wow…it hit me like a ton of bricks when we finally realized this.  It wasn’t that he didn’t get a toy or treat, it’s when he knows that he did something that he shouldn’t have done or that he did something that brings him negative attention.

The mind of the autistic child is so fascinating.  I wish I could just plug into my son’s brain and see how he sees–someone will develop that and will become a Gillionaire!

Yes he still gets upset when he gets in trouble or doesn’t get his way, but the older my son gets the more i see that his frustration is not only in his lack of communication, but that he understands that he’s not “typical” and that he sees how at times it brings him attention that isn’t the right kind of attention.

Anyone else have similar experiences? Thoughts?  Words of advice or in addition to?

To read more blogs from Seth and TheFowler4Group, check out their Website (www.lookatmyeyes.com) and while you’re there, buy a copy of their book, “Look At My Eyes”.  Or find them on YouTube.  To contact TheFowler4 Group email: info@thefowler4group.com

Mirame los Ojos…Look at My Eyes…Autism in Spanish

Hopefully you are already aware of the book my wife and I wrote last year, Look At My Eyes.  IF not…then you need to check it out.  We penned the book to discuss not only our story of dealing with navigating the autism spectrum, but to share helpful in-home exercises, words of encouragement, ways to deal with insurance issues, good Websites and I wrote portions from a father’s perspective–because there is so little out there for dads when dealing with a child with autism.

The book has been out for about 15 months and we’ve had a blast telling and selling.  We have been blessed to have caught the attention of many in the media, conference organizers and parents who are desperate to have a good resource that is a quick read and is meant to bring a message of hope and encouragement.

At our first speaking engagement an elderly lady came up to me and told me about her grandson that she was taking care of and thanked me for writing the book and spending our own time and our own money to publish the book.  She did not speak English very well…she spoke Spanish.

While she could read our book and understand what we were saying at our talk, she was more confident in her native language.  That makes sense…we see that a lot these days.  You only have to turn on the local sports station to see athletes from all over the world playing in the United States doing interviews in their tongue they are most comfortable using.  Heck, there are players who have lived/played in the U.S.A. for years and you know they speak English very well but they just want to be more confident speaking their favored language.

Autism has no language.  Autism doesn’t affect English-speaking children more than Spanish-speaking children.  Autism doesn’t care where you are from, what kind of car you drive or whether you vote red or blue.

And so it hit me…we need to have our book translated into Spanish.

I immediately started thinking how I could make that possible.  The first printing cost us a good bit of money and I doubt we’ll ever “break even” (would be nice but that’s not our goal) and we didn’t have the funds for a second book like we did for the first one.

It was high on my prayer list.  I would pray that it would be possible because there is so little in the Latino community in terms of outreach and resources for families dealing with autism.

It was really cool how it all came about.

As it turns out…my brother-in-law’s brother (follow with me here) is a licensed translator and would be living in the U.S. for a few years…he and his wife spend a lot of time in Central America and we don’t see them that often.  But he would be living only 2 hours from us for a few years and would be willing to help translate the book for a very affordable price…step one.

Step two was finding a publisher that would allow us to keep the rights, not cost quite as much as our first publisher and yet would help us distribute the book and make it available online.

A family friend of ours also has been writing a book.  He used a publisher that met all that criteria.  They were a fraction of the original publisher, they didn’t take so much money up-front (that was huge bc we didn’t have the funds) and they arm of the largest Christian publishing house, Thomas Nelson Publishing, in the world…so they have a great reputation and know how to get things done.

I was so happy to learn about these two options!  When discussing marketing and outreach with our new publisher my answer was, “well, we didn’t spend any money on outside resources with Look At My Eyes and we have been able to generate a good amount of buzz.”

But that wasn’t going to be the case with Mirame los Ojos…not only do I have not have the time to do much for the first book anymore, I certainly don’t have the time or energy to promote the second book…it’s exhausting (oh and I also run the sales and marketing division of a new home building company so yeah, I’m pretty busy)

The icing on the cake with our publisher was that–since we didn’t come out of pocket as much as I had thought/planned for Mirame los Ojos we would be able to spend a few dollars utilizing their marketing and PR arm of their operations.

And thus…Mirame los Ojos came about.

It’s been a few months since the book was officially released.  I have no idea how it’s selling…hopefully well.  We recently spoke at the Autism Society National Convention and met with a number of families, presenters, professionals and they were extremely excited to know about the Spanish version of the book.

Our PR firm started last Monday.  We had enough money to pay for about 3 months of outreach.  I can’t wait to see what’s in store for us and for both books with their knowledge, savvy and muscle behind our efforts.

We have already presented to a group of Latino families (we spoke English and it was translated) and the response was amazing!  We sold more books than we ever have for a small presentation.  You could just see how thirsty the parents and care takers were to get helpful information in their more comfortable tongue.

For Christmas this year I have asked for $$$ so I can purchase Spanish lesson software.  I speak a little French (worthless in Texas) but am dying to learn to speak Spanish.

My goal is to not to need a Spanish translator when I meet a father or speak to a group of parents…how cool would that be!

We live in Fort Worth, Texas…if you know ANY organization or group, church, whatever that would benefit from us sharing our story and message of hope in English or Spanish…please feel free to contact us for an engagement…we would love to help in any way we can.

So buy the book in English and in Spanish and tell everyone you know about them.

To read more blogs from Seth and TheFowler4Group, check out their Website (www.lookatmyeyes.com) and while you’re there, buy a copy of their book, “Look At My Eyes”.  Or find them on YouTube.  To contact TheFowler4 Group email: info@thefowler4group.com…oh and they just released their book inSPANISH as well…buy it now!

Autism and Cord Blood Stem Cells…what’s a father supposed to think?

Recently I was sent an online article from BioResearch Online entitled “Autism and Cord Blood Stem Cells: FDA Gives Green Light For Ground Breaking Clinical Trial.”

I know I may seem pretty darn smart (I tell myself that often) and I know I look super smart BUT I am at a complete loss when it comes to cord blood, stem cells, bioresearch and all that!  Of course I’ve heard of the terms, but after reading this article it certainly gave me a sense of hope.

Could my child really ever be “cured” of autism?  Is it right for me to have that hope?  What does this all mean?

A couple of things came to mind…I immediately wanted to know how I could sign up for the clinical trial.  What parent wouldn’t be interested in that?  I also started thinking…”what if we were part of the trial and were the placebo element of the trial?”  Would that suck or what?

If you’re a parent of a child on the autism spectrum you probably know where I’m coming from.  We’ll do just about anything to help our son, William, who is now 6-years-old.  Just imagine him talking to me.  Just imagine him not stemming or making that awful squealing noise CONSTANTLY during the day.  Just imagine him leading a “typical” lifestyle.

One of the key chapters in our book, Look At My Eyes that my wife and I wrote in 2011 (now available in Spanish as well Miarme los Ojos) discusses how important it is for the family to be unified in their decision for treatment, therapy and expenses when it comes to their child with autism.

I’ve seen (and experienced first hand) too many couples and families who have had major arguments and divisions when it comes to these issues.  No father wants to deny his child services…but not many fathers can actually afford to do every therapy, treatment or service…at least not this father.

When William was younger my wife, Melanie, would drive all over the DFW Metroplex (if you don’t know…it’s very big) to go to this doctor and that therapy and this activity…hoping to find a solution or therapy.

It was a HUGE strain on her, our son, the family checkbook and our relationship.  THE BIGGEST KEY to making the marriage survive when dealing with special needs children is to BE ON THE SAME PAGE!

I’m sure there are risks involved with this cord blood stem cell research…has to  be, there are risks with just about everything.  I don’t know if my wife would be as excited as I was when I read the article.  She might be more hesitant when it comes to the health of William and potential risks.

There are many “cures” out there…many that are medical or have medical claims but PLEASE BE CAUTIOUS…this is your child we’re talking about here.  A “cure” does not exist…so be careful not to put all your hope and trust in a claim that could potentially be harmful to your child.

Finally I thought, “do I want my son ‘cured’ from autism!?”  Is that twisted or what?  Yeah I want him cured.  Yeah I want him to be typical.  Yeah I want him to be happy.

But what if he IS happy?  I know he gets frustrated with lack of ability to communicate at times.  I know we are frustrated when we are dealing with his behaviors and such.  But does that mean he’s not happy?

Is it my happiness that I’m seeking or his?

Would William BE William if he took a magic pill or cord blood and didn’t have autism?

Have you considered that?  I don’t think I had until I read this article.  Almost like in The Matrix when Neo has a choice…take one pill and stay the same…take the other and your life is totally different and you can’t go back.

It’s not that easy of a decision is it?  On one hand you don’t want to deal with autism and all that stuff…but on the other hand, if your child is “cured” all of a sudden, are they the same child?  Different?  Better?  Worse?

In conclusion…bring on the trial.  The way our FDA and government work it’ll be 2040 before they approve or make a recommendation.  At least it’s a start–so who knows, maybe they’ll find a cure that will help children and change our society forever.

Meanwhile…take delight in your child.  Your child is YOURS…a gift, a blessing–no matter how much the stem or squeal or wipe poop on the floors.  Focus on the joys your child brings you when they are able to communicate….when they do look at your eyes

Be a team with your partner…be on the same page with finances, treatment and therapy.  Cord blood stem cell or not…love your child for who he/she is…yours!

To read more blogs from Seth and TheFowler4Group, check out their Website (www.lookatmyeyes.com) and while you’re there, buy a copy of their book, “Look At My Eyes”.  Or find them on YouTube.  To contact TheFowler4 Group email: info@thefowler4group.com…oh and they just released their book in SPANISH as well…buy it now!

Don’t look at my son like that!

I hate “that look”…if you’re a parent (especially a father) of a special needs child…you know what I’m talking about.

This has been a busy summer for our family…a great summer for my children, getting to be with family and friends and especially cousins…they love their cousins.

My 6-year-old son with autism has really had a great summer.  He attends summer school and loves that–he’s been going to school pretty much year-round since he was the age of three…that might sound a little mean, not to give a kid a summer break, but with early intervention and solid reinforcement and ABA therapy, he’s happy and improving with his verbalization and socialization.  William loves being around his cousins and so having a few family vacations mixed into his busy summer school schedule is quite a treat for him.

This past weekend we were able to join my side of the family on an extended weekend in the Texas Hill Country to hang out on the Blanco River and all be together.  He did a fantastic job!  His cousins are mostly girls and a few years older and, together with my very strong-willed 4-year-old daughter, they keep him very involved.  It brings me great joy to see him being around his cousins because he is just one of the bunch.  He doesn’t have the typical friend relationships because he doesn’t really interact with other children.  He doesn’t sit in a corner or anything like that when other children are around–he’ll be near the action–but he’s not really part of the action.

During our vacation we took everyone to a swimming hole that was a ton of fun!  It’s in a state park where there are huge trees, river access, tubing and the all-important rope swings.

Now my son is not one to really be adventurous.  I don’t know if he’s afraid of things, maybe just a bit cautious.  This is his first year to really enjoy swimming–thanks to 6-8 months of swimming lessons–and while he’s mostly a dog paddler, it’s very freeing for me and my wife to not have him either stand on the side while everyone else is in the water, or cling onto us in the water for dear life.

So back to this rope swing…so much fun!  They had one just for children and the line was long to enjoy it.  Kids would grab it and swing into the very chilly water of the river and do it over and over and over again.

I was just happy William was in the water–it was really cold and for those of you who have seen William, he’s a string bean with very little meat on his bones to keep him warm.

I had no thoughts of William ever wanting to attempt the rope swing, but when I causally asked him, imagine my surprise when he not only said, “YES” but got out and headed right over to it.

For the next 3+ hours that’s about all he did…it was fantastic!  He would climb up the little ladder, grab the bar on the rope and hold onto it and swing into the water.  He didn’t hold on very long most of the time–so it was like he was jumping into the water–but it was a thrill to see him be a “typical child” and get so excited to be doing what all the other children were doing.

So I was pumped up!

Then came “that look” (and you thought this was just going to be a blog where I gushed praise and joy…nope)

There I was, helping him stand in line (not easy) and get a hold of the bar of the swing.  His cousins and other family members were taking pictures and just having a great time enjoying that he was having a great time.

As we were standing in line he was shivering and flapping.  He still flaps when he gets excited and he was not only really excited but he was probably really cold because the water was cold and there was a wonderful tree canopy.  So as we were standing in line shivering and flapping I noticed two younger boys staring at him and snickering to themselves.

These boys were probably 8 to 10 years old if I had to guess.  They were also enjoying the rope swing…and they were enjoying noticing that my son wasn’t typical.

Here I was, on Cloud Nine because my son was doing something daring and brave, he was having this fantastic time and I was so proud of him…and yet I was crushed.

That look…you all know what it is don’t you?  Maybe you don’t see it directly but you certainly can feel it when you’re out in public and your child is doing something that’s reserved for our Special-Ism Children.  That look.

I wanted to push those boys into the cold river water.  I wanted to get into their 8-year-old faces and give them a piece of my mind.  I wanted to defend my precious boy, whom I love and am so proud of for all the progress he’s making.  I wanted to cry, scream, fight…everything.

I did nothing.

As I stood there, William flapping and making his inaudible noises, the boys giving that look and snickering at one another about how William was behaving, I just stood there…taking it all in.

Just like that cold river water, the splash in face of cold reality just crushed me.  The reminder that my son isn’t “typical.”  That he’s not just one of the boys.  That he is going to probably stand out in many situations for the rest of his life.

So on this day of joy and gladness…it was also a time of reality and sorrow…and that sucked.

What should I have done?  What should you do when you get “that look”…what have you done in the past?  Here are a few thoughts…I’d love to hear your opinions on what I should’ve done…

1. Ignore…easier said than done but I can’t go through life with a huge chip on my shoulder about my son.  I can’t be there to defend him from those looks and snarky whispers.  So maybe we just ignore?  Ehhh…that’s hard

2. Confront…I almost did that.  I almost tapped those boys on their shoulders and gave them a piece of my mind.  Not that I would’ve really gotten onto them,but maybe I would’ve gently informed them of William’s situation and how they should be celebrating his accomplishments like the rest of us

3. Make a scene…again, would that have accomplished anything?  One of my concerns about making a bigger deal out of it was that I didn’t want to put a damper on William’s experience.  Although he doesn’t talk much and oftentimes doesn’t appear to be paying attention–I KNOW that he would’ve understood what was going on and I don’t want for him to be more and more aware that he’s not “typical”…that he’s different from others.

4. Removed ourselves from the situation…but why?  Why should my son be punished and removed from a fun situation just because others are making fun of him or commenting about his actions and behavior?  I’m glad I didn’t do that.

5. Blog about it…bingo!  That’s what happened.  SO here I am, expressing my sorrow and frustration…but was that the right thing to do?

I know I can’t be there for my son every time someone gives him “that look.”  Maybe he doesn’t care if people are looking at him like that.  Maybe he doesn’t even know they’re looking at him like that.  Maybe it’s all on me.

Whatever it was, it was an incident that still sticks in my brain.  There we were, having a great time–and we still had a great time–playing, experiencing, participating, enjoying…and yet there’s always that little reminder that our children aren’t quite the same.

Anyone have any thoughts?  Would love to hear

To read more blogs from Seth and TheFowler4Group, check out their Website (www.lookatmyeyes.com) and while you’re there, buy a copy of their book, “Look At My Eyes”.  Or find them on YouTube.  To contact TheFowler4 Group email: info@thefowler4group.com…oh and they just released their book in SPANISH as well…buy it now!